My son is 18 months old. He had RSV, that took forever to go away, and pneumonia before three months of age. He had a lot of colds until that fall (9 months) and then just a lot of nose mucous since. He has issues with malabsorbed food and extremely foul smelling stools. This started when he started eating solids. The smelly part was always though.
He has been tested for celiac's disease via an intestional biopsy. He doesn't have all the criteria to be diagnosised with it so he needed to respond to the diet. Most ppl respond within days, he has had minimal results in six months. His weight yo-yo's up and down - but he tends to live around the 30th percentile. (he has four siblings that were all 95% at his age)
He did have two sweat tests, at an accredited center. His scores were 37 and a 23. The insurance at the time would not pay for the ambry. His current insurance will pay if I can get someone to run it. I know my pedi would order another sweat if I asked (ordered) him too - but he is convinced this is NOT cf. We are seeing a genetic doctor in mid sept - we are hoping he will run the full panel. I can pretty much make him order the full panel right?
His other symptoms are
cyanosis around his mouth
his voice is very nasal, like his nose is always plugged
he loves, loves, loves salt
his chloride levels are typically elevated in the blood tests
His mucous is very thick and sticky - even his spit up
He is now cycling between very thick stools (consipation) and very loose
oh and we did the fecal fat assay. He was barely eating at the time - but it was normal. (a 2 with a range of 2 - 7)
I should also tell you that he is selective IgA defincant and has a bleeding disorder called von Willebrand's disease (type 2A). That is another complicating factor with the pedi - he doesnt believe that he could have ALL of those things and CF too.
My main question is what were your children's sweat scores? (I am interested in the difference in the two) That and advice on how to MAKE someone order the test for my son. His case manager assures me that insurance will cover it.
Thanks so much!
He has been tested for celiac's disease via an intestional biopsy. He doesn't have all the criteria to be diagnosised with it so he needed to respond to the diet. Most ppl respond within days, he has had minimal results in six months. His weight yo-yo's up and down - but he tends to live around the 30th percentile. (he has four siblings that were all 95% at his age)
He did have two sweat tests, at an accredited center. His scores were 37 and a 23. The insurance at the time would not pay for the ambry. His current insurance will pay if I can get someone to run it. I know my pedi would order another sweat if I asked (ordered) him too - but he is convinced this is NOT cf. We are seeing a genetic doctor in mid sept - we are hoping he will run the full panel. I can pretty much make him order the full panel right?
His other symptoms are
cyanosis around his mouth
his voice is very nasal, like his nose is always plugged
he loves, loves, loves salt
his chloride levels are typically elevated in the blood tests
His mucous is very thick and sticky - even his spit up
He is now cycling between very thick stools (consipation) and very loose
oh and we did the fecal fat assay. He was barely eating at the time - but it was normal. (a 2 with a range of 2 - 7)
I should also tell you that he is selective IgA defincant and has a bleeding disorder called von Willebrand's disease (type 2A). That is another complicating factor with the pedi - he doesnt believe that he could have ALL of those things and CF too.
My main question is what were your children's sweat scores? (I am interested in the difference in the two) That and advice on how to MAKE someone order the test for my son. His case manager assures me that insurance will cover it.
Thanks so much!